May 29th update

Bennett is doing good. His ankle is hurting some and is still swollen but not as bad. It’s not slowed him down though. Him and a friend rode their bikes to school to pick up their report cards from town. They rode to Hardee’s and ate breakfast which Bennett said was delicious. This has been a tradition for him since 5th grade.  His friend he has always done this with graduated this year but Bennett found a 7th grade friend to join him.

I got a phone call from him letting me know that they were going to go to our house, I asked him, How are you going to get there? and he said ride their bikes. That’s 4 miles from town and they probably already had rode a mile! How amazing! Bennett felt like riding his bike wouldn’t make his ankle any worse.

Bennett was really excited about his grades. He got straight A’s this past nine weeks. It was a real struggle to keep up with everything but the teachers were so helpful and understanding. We couldn’t of made it without them and his home bound teacher!

We have been thinking about all of our friends from the hospital that we have met. We met several more children and their family when we were there recently. Some we have never seen before, some were newly diagnosed and others we have known for awhile. It is so heartbreaking to see everything these kids have to go through.  It is very humbling.  When I find myself upset about Bennett’s situation, I always think of some of the kids at Children’s that are still there especially our friend Ryan.  Ryan still cannot eat and is still in the hospital. Please pray for him, Bennett and all of the precious children that are fighting this awful disease. God is the ultimate healer and physician.

“Evening and morning and at noon I will pray, and cry aloud, and he shall hear my voice.” Psalm 55:17

Posted by Cindy on May 29th, 2008 in Updates | Comments Off on May 29th update

May 28th update

Bennett is doing great! His ankle has been pretty swollen last night and today. He has put ice on it to try to help. You wouldn’t think though with all the activity he has been doing today that he has a sore ankle. He has said that it does hurt.  He has taken ibuprofen too. He probably should elevate it all day and not really put any pressure on it but how do you tell a boy that is ready to have some fun and feels good that he can’t.

He walked 5 holes of golf this morning with Grandma Page. It was a beautiful day. Him and I went to lunch together. I enjoy this time with him to catch up on his day and remind him of all the things he has to do (take medicine, use sunscreen/wear long sleeves, eat a banana, etc.) It really makes me nervous some days but he is good of keeping in touch with me while I’m at work. He did take about a two hour nap this afternoon. Tonight, he has a friend over and they have been playing wiffle ball with Hamilton. It has been over two months since Bennett has had a friend over. I am glad he feels up to it. Little things like this means a lot, it puts a little normalcy as a teenage boy life should be.

Yesterday at the clinic, Bennett weighed 122 pounds. Yeah! Since he has started taking steroids again, his appetite is sure to increase. The Dr. has switched his steroid pills to prednisone from dexamethasone. The study that he is on has found out that the dexamethasone was causing bone problems in children so they have switched the study to only give prednisone. We are praying Bennett doesn’t get any of these side effects or any others.

Thank you for checking in on Bennett and your prayers. May your life be blessed with happiness and love.

“He will rejoice over you with gladness, He will quiet you with his love, He will rejoice over you with singing.” Zephaniah 3:17

Posted by Cindy on May 28th, 2008 in Updates | 3 Comments

May 27th update

Bennett had a good day. We left earlier and met one of our favorite nurses from the hospital at Forest Park and walked around/visited for about 45 minutes. Our clinic visit was rather long today. He saw the Dr. and she thought he was doing good. She was concerned about his ankle. When she touched it, he said it really was sore but he didn’t complain about it hurting while we walked around at Forest Park. We went and had x-rays of his ankle/foot and waited for the results. He has fluid built up around his ankle probably turning or landing on it funny. She told him to wear a brace and keep it elevated as much as possible.

The Dr. did a physical exam and thought he needed improvement in his ability to balance and walk a straight line after I filled her in on his few falling episodes. She did indicate that she thought he did okay since he was just now building back his strength but she wanted to see him improve next time if possible.

I asked her about his lower ANC and she indicated that it’s probably just taking some time since he had a really bad infection. I told her I was concerned since he hasn’t had any chemo for a month and his numbers are hanging around the lower end. She wanted to go ahead and start chemo treatment as they don’t like to wait too long without some fight against any hiding cancer cells. She does want us to have a CBC test weekly at our local hospital so she can keep an eye on his counts. This makes me feel better. She also wasn’t worried about his creatinine level, potassium, or calcium. She suggested drinking lots of water, eating banana’s and drinking milk and we would check these levels again in a month.

Besides the iv push of vincrisine today, he also started steroids which are 4 pills twice a day for the next five days. He also took two 6mp pills tonight and 13 methotrexate pills. I told the Dr. I was concerned about the methotrexate and felt like it was the cause of his skin irritation/sunburn from being so bad. His legs are much better but sometimes have a pinkish tint to them so I don’t think they are 100% healed. I took a picture of his legs/arms tonight before he took the methotrexate and will keep a close eye on his skin.

We made it back into town just in time for Bennett to go straight to baseball practice. He took it easy on his ankle and didn’t run any. He is icing it tonight and he said it already feels some better or just numb.

We are praying that as Bennett continues through his maintenance phase that it is uneventful and he stays healthy.

“You are of God, little children, and have overcome them, because He who is in you is greater than he who is in the world.” 1 John 4:4

Posted by Cindy on May 27th, 2008 in Updates | Comments Off on May 27th update

May 26th update

Bennett is doing good. His energy level is increasing each day. Since Friday, he has been up all day with no naps! We got home yesterday afternoon from camping. He went golfing 9 holes late afternoon with his Dad and played wiffle ball with Hamilton. He has been keeping busy.

He has fell a few times. He fell out of the boat after docking it at the pond which of course made us nervous. He had a life jacket on but got wet from head to toe. He also fell getting out of the golf cart when stepping on uneven ground. He has done this periodically but had improved. It just seems lately it’s little worse when stepping out/down. I am going to mention it to the Dr. because I believe this is a side effect of the vincristine which he hasn’t had since April 15th.

His ANC today was 1,302 from 1,275. WBC was 3.1 and neutrophils were 42. Hemoglobin is 10.3 from 9.5 and platelets are 141 from 146. We thought his counts might be higher with nothing really to bring them down since he hasn’t had any chemo. I guess it’s going to take awhile for his body to build back up. His counts are high enough tomorrow for treatment in St Louis. He should get an iv push of vincristine at the clinic. He will start taking steroids twice a day for 5 days, plus take 6mp chemo daily and the methotrexate weekly on Tuesday’s.

His creatinine (kidney function) went down to 1.0 from 1.3 but is still high. Bennett’s level is usually around .07. His potassium stayed at 3.0 and he has ate a banana every day and 3.6 is normal. Also, his calcium is low at 8.1 and normal is 8.4 so we are not sure what the Dr. will want to do.

We went to the movies this afternoon and saw Iron Man. We were still careful not to sit by a bunch of people. Bennett is gradually eating better. We continue to pray that he continues to build up his appetite and strength. We pray that the infection he had is gone and he stays in remission FOREVER!

“The Lord will perfect that which concerns me; Your mercy, O Lord, endures forever; do not forsake the works of your hands.” Psalm 138:8

Posted by Cindy on May 26th, 2008 in Updates | 2 Comments

May 24th update

Bennett is doing good. He went to school yesterday for the first time in a while! I was glad he was able to go one more time before school’s out. Tuesday is the last full day but Bennett has an appt in St Louis to start his chemo treatment again as long as his counts stay good. We will check them either Monday or Tuesday morning.

We came out to my Dad and Mom’s last night to camp out, fish, ride four wheelers, shoot guns, and cook out. Bennett caught a few blue gill today but the fish haven’t been biting that good yet. Remember our troops that have lost their lives fighting for our country. This is a good time to reflect on all the memories that we so treasure from our loved ones that are in heaven. Hope everyone has a great holiday weekend!

Posted by Cindy on May 24th, 2008 in Updates | Comments Off on May 24th update

May 22nd update

Yeah!  Bennett’s ANC today was 1,275!  We are so pleased.  We all were starting to get nervous of why his bone marrow wasn’t producing wbc especially since he hasn’t had any chemo in 3 weeks. His WBC was 2.5 and had 51 neutrophils.  His Hemoglobin dropped to 9.5, his nurse said not to worry about it that it’s fine.  Platelets went up to 146.

The creatinine is 1.3 from 1.5.  Not as big of decrease of what we would like.  His Dr. thought though since he isn’t taking the ampho drug anymore that it should go down so she agreed to take him off iv fluids!  Bennett just has to drink a lot and he is just doing fair with this.  He was so happy to be de-accessed today which means he could take a shower and not to have to worry about bumping the needle that was in his port.  His potassium is low at 3.0 and normal starts at 3.6.  Dr told him to eat at least a banana a day.  

“YOU HAVE TO SEE IT TO BELIEVE IT”  Bennett’s team had a double header tonight in DuQuoin and won both games.  Bennett’s legs were really bothering him before the game.  We are assuming they are soar from the activity he has done the last few days that his body isn’t use to.  He batted twice and got a single, walk, RBI, 2 runs scored.  His legs/ankle became increasingly worse so he asked the coach to take him out of the game.  He was limping to the dugout.  If truth be told, Bennett should of probably not of even attempted to play but the excitement, confidence, and satisfaction for just those few minutes was worth the pain in his legs.  His team doesn’t play for several days so we are praying that his legs will be healed and he will continue to gain strength each day.  It was unbelievable that he dressed for the game but to get a hit and runs for his team is from the grace of God.

Posted by Cindy on May 23rd, 2008 in Updates | 2 Comments

May 21st update

Bennett is doing pretty good. He was tired today and spent all day in bed watching T.V.  He slept most of the morning until I woke him up to unhook him from his fluids. He only ate a couple bites for lunch but did eat a good supper. He was complaining of his legs hurting him this afternoon and he took some pain medicine.

He went to Hamilton’s game this evening and warmed up with them. He was the 3rd base coach during the game. We won. I was glad to see that his legs stopped bothering him.

He is hooked back up this evening with a bag of fluids. He was disappointed when I reminded him that we had to hurry home after Hamilton’s game to get him hooked up so his fluids would be done when the home health nurse comes in the morning. He doesn’t like having to carry the bag of fluids and pump around with him. The nurse will come and draw blood for a CBC test and also a COMP test that will tell us what his creatinine level is.  Our prayer is that his ANC is good and that the creatinine level comes back normal!

I don’t know about tomorrow, I just live from day to day;

I don’t borrow from its sunshine, For it’s skies may turn to gray;

I don’t worry o’er the future, For I know what Jesus said,

And today I’ll walk beside Him, for He knows what is ahead.

Many things about tomorrow, I don’t seem to understand;

But I know who holds tomorrow, And I know who holds my hand.

Author unknown

Posted by Cindy on May 21st, 2008 in Updates | 2 Comments

May 20th update

One week ago today, Bennett was laying in the hospital bed lifeless. He felt so bad that he didn’t care anything about eating, drinking, or talking. This was the day that we met the infectious disease team of doctors which was a total of 6 doctors. Pretty scary just by the name alone. He had 18 different tests done this day and some were painful. We were living the unknown of what was causing Bennett’s fevers and his low counts, and just not feeling well. The only thing holding us together was our faith in God and our family/friends.

I lead off with the post tonight to remind us of what was going on one week ago on May 13th because God has truly performed a miracle and has healed Bennett once again.  He has a little ways to go yet, he needs a higher ANC, creatinine level to be normal and him getting back to his old self. Well, one of three isn’t bad. Tonight Bennett wanted to go to his team’s baseball game, when he was telling me this at lunch, I thought he will change his mind later in the day when he really thinks about it.

He was calling me at work asking me where a couple things were and he was getting ready for the game. I went out to the park later to find Bennett warming up with the team. Is this the same boy that was discharged from the hospital 3 days ago? Bennett ended up playing the 2nd game for about 3 innings. He batted twice and hit the ball but got out on first. The best part about the whole game was the ride home listening to Bennett being so excited about getting to play. Thanks to his coach. He says nothing can stop him not even this awful amphotericin antibiotic drug he got yesterday. Bennett hasn’t complained about being tired (but I know he has to be). I was impressed he made it through warm ups and a double header in the upright position. This has to be God’s work!

I hooked him up to his iv fluids tonight after he ate. The fluids will run for 12 hours until late morning. His appetite has been better today too and he is drinking more.

We are so thankful for God providing Bennett with enough strength to get him out of bed and out of the house. I am sure Bennett needed this night more than any of us really know. His ANC is still low and we pray it will soon be up. I’m glad we are in the sport of baseball so he can be outside and not worry so much about sickness of other people.

All of God’s people said, AMEN!

“Now thanks be to God who always leads us in triumph in Christ.” 2 Corinthians 2:14

Posted by Cindy on May 20th, 2008 in Updates | 4 Comments

May 19th update

11:30 am Bennett’s ANC today is 475 from 540 from Saturday. Not the right direction we wanted it to go. He is back in the severe stage with a very low ANC. His WBC are 1.9 and neutrophils are 24. Hemoglobin is 10.1 and platelets are 115 which are good. His creatinine level is really high at 1.5. Normal range is 0.2 – 1.2. This is what controls your kidneys. They are giving him an extra bolus of 500 ml of fluid because of the creatinine being high; he already had 500 ml. He has been pre-medicated with tylenol, benadryl, and demerol. He will get the ampho over 2 hours and than will receive another bolus afterwards. Bennett slept on the way here and as soon as we got in a room, he went to sleep. He weighed 116 today and temp was normal. He doesn’t need to lose anymore weight, he has lost 9 pounds.

*3:45 pm Bennett is about done with his last bolus of iv fluids. The Dr. in the clinic thought today should be his last dose of ampho. She is concerned because his creatinine is so high so she is ordering for him to have iv fluids over 12 hours at home for 3 days. The home health nurse will come each night and than I will unhook him. He will stay accessed so he can get the fluids. On Thursday, they will check his creatinine level, also a CBC test and we will go from there.

*9:30 pm Bennett is pretty tired. He did stay awake on the way home but didn’t say much.  He hadn’t wanted anything to eat all day, when we got home he finally ate a few bites.  All the nurses in the clinic plus the home health  nurse that came tonight have all said that  the amphotericin drug is horrible,  very strong.  We are praying that his creatinine level goes down and that his kidney’s are not damaged. We are praying for his ANC to get closer to a normal range.  It’s always concerning when his bone marrow isn’t make WBC very fast.

‘”Let us also lay aside every encumbrance and the sin which so easily entangles us, and let us run with endurance the race that is set before us.” Hebrews 12:1

Posted by Cindy on May 19th, 2008 in Updates | 3 Comments

May 18th update

Bennett is doing pretty good, actually he is doing great considering. He slept in this morning and than we went back out to the farm. We all fished and the boys rode the four wheeler around. Bennett finally caught a fish today, a bass.

When we got home, Bennett was exhausted. His leg was really bothering him, he said it felt numb. He took some pain medicine. He stayed in bed the rest of the afternoon. His baseball team had practice at 6 and he went out to the park just to say hi. He didn’t feel like staying. He has been back in bed this evening.

We leave in the morning at 6:30 am for Bennett to get the amphotericin antibiotic in the clinic. We hope it all goes well and we can come back home. If Bennett’s counts are high enough, I bet the Dr. will want to start his chemo on Tuesday. Than he will have the last dose of ampho on Wed.

We are curious of what his ANC is; I am assuming they will check tomorrow at the clinic so they will know if it’s high enough to start treatment. It would be great if it doubled again. With it low, he can’t be around a bunch of people especially indoors. So, it is very unlikely he will make it back to school before it gets out.

“The Lord is wonderfully good to those who wait for him, to those who seek for him.” Lamentations 3:25

Posted by Cindy on May 18th, 2008 in Updates | 1 Comments

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